A Retrospective Study of the Last Year of Life for People with Intellectual Disabilities in Community Residences

Death is inevitable for all; however, the nature of that death varies significantly across subsets of the American population with the opportunity to die well often reserved for the privileged and abled. In the last ten years, there has been increasingly more attention paid to issues surrounding serious illness and end-of-life care for adults with intellectual disabilities (IDs). However, care for this population remains fraught with complex challenges and wanting for best practices and standards. Further, research seeking to identify the complexity of issues faced in the provision of end-of-life care for this population, particularly in the United States, is scarce and often biased toward the perspective of caregivers. This multiple-case study sought to explore and describe the illness trajectory and differential end-of-life experiences of adults with IDs within the last year of life in diverse community residences operated by one provider agency in New Jersey. Retrospective data from three sources (records, staff, surrogates) was collected sequentially and triangulated via within and cross-case analyses. This study offers a meaningful contribution to the extant literature by elucidating the last year of life for adults with IDs in community residences. It offers insights into how people with co-occurring IDs and serious illness diagnoses experience their final year, month, week, and moments of life. This study integrated staff and surrogate perspectives with archival data to illustrate the differential experiences that facilitate and impede the ability of people with IDs to die well.

Grantor dc:publisher

State University of New York at Buffalo

Year dc:date.issued

2018

Author dc:creator

• McGinley, Jacqueline; 0000-0002-8037-9318

Contributors dc:contributor

• Waldrop, Deborah
• Social Work

• social work
• disability studies
• gerontology

Statement dc:rights

• Users of works found in University at Buffalo Institutional Repository (UBIR) are responsible for identifying and contacting the copyright owner for permission to reuse. University at Buffalo Libraries do not manage rights for copyright-protected works and cannot assist with permissions.
• Copyright retained by author.

Language dc:language

eng

Handle dc:identifier

http://hdl.handle.net/10477/78035

OAI record oai:identifier

https://ubir.buffalo.edu/oai/request?verb=GetRecord&metadataPrefix=qdc&identifier=oai%3Aubir.buffalo.edu%3A10477%2F78035